I had my first Rheumatologist visit a couple of days ago. She was nice and thorough. She asked a lot of questions and did a physical exam. She also drew 12 vials of blood, did a chest X-ray and X-rays of my sacroiliac joints.
She is leaning toward Lupus, but we will have to wait on the blood tests to be sure.
I go back in 3 weeks for the results.
In the mean time, I asked a few questions about Lupus and the do’s and don’ts. She basically told me to do what I feel like and rest when I need to. This is a hard transition for me. I am used to pushing through regardless of what I feel like. I’ve had back issues for years and always worked through the pain, but this fatigue is something new for me.
When I got home, I did what all good patients do and Googled it. Luckily, the doctor told me it is a spectrum type disease. This means that every person with this disease looks different. It also means that one person can look different each day. The reason I say “luckily” is that the things I read are scary. There are certain things that can cause flare ups. #1 on most lists is…STRESS. How do you not stress when you don’t know what your body is doing? When work is tough and your anxiety is already high and your body is fighting against itself?
This disease can be bad. Mayo Clinic says that people may experience:
- Pain in the muscles (and joints). Pain can occur while breathing, which is scary and can be sharp in the chest.
- Whole body symptoms can be anemia, fatigue, fever, or malaise.
- The mouth often has dryness or ulcers. Skin may experience red rashes or scaly rashes. Attractive, right?!
- Also common: anxiety, blood in urine, clinical depression, face rash, flare, headache, joint stiffness, raynaud’s syndrome, sensitivity to light, swelling, water retention, or weight loss
So, all this but don’t stress. How do you do that?
For me, I have to kickbox. That’s my outlet. It’s been an amazing outlet, but there are some days I need to rest. So what then? I’m not sure yet. I have to figure out an outlet that requires less of my body (besides sleep). If you have any ideas, let me know!
Fly high, Unicorns!